Caring bridge site

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ocstacy
Posts: 264
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Caring bridge site

Postby ocstacy » Mon Jul 24, 2017 1:29 am

Hi All,

Some of you may have heard of Caring Bridge.https://www.caringbridge.org/ For those who haven't heard of it, it's a site that you can create for yourself or a loved one to keep your family and friends up to date with a loved one's Personal Health Journal for Any Condition. I notice the younger generation use it, but not the older generation. I think sometime people get it confused from "Go fund me' which is totally not what this site is about. Caring bridge is not a site to donate money, it's sharing information. My cousin, professor, and friend has/had it and it really helped the family know what was going on instead of calling everyone or repeating the same story. You can also share photos, etc.

I wanted to get your thoughts. When is it appropriate to start one of these journals? Should you ask permission of the person you want to write about? For example my mother, who is 77, she isn't a big internet person and is a very private person but I feel like she has to repeat telling the same story over and over again. I am my mother's DPOA and I live two homes down from her. I spent pretty much 5 days out of the week with her and I am not working at the present moment so I can care for her. She will be staying with me the duration of the summer so I can cook and help her while she is on treatment.

I do not talk to a lot of my family members because we live so far from one another. Any thoughts? Is it a personal preference? Is there a time where you should start it? I do not want people to think that I hid my mom from the world. She is very private and also undeniable at times.

Thank you,

S
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

bitchslapped
Posts: 1527
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Caring bridge site

Postby bitchslapped » Sat Jul 29, 2017 3:36 pm

I would definitely get permission from your mother since it is her private business & all about HER. Is she complaining about having to repeat herself or does she somewhat enjoy having the personal interaction w/people who ask how she is doing? It is important that she is not isolated from contact w/others & no big deal if she leaves a few details out IMHO. Talking to friends/family might be useful for her in expressing herself.

It's a wonderful thing you are doing by taking your mom in, but hoping she can remain her own spokesperson. Definitely discuss w/her & ask her when she might be open to something like this.
If you are the one fielding most all of the inquiries I'd still get mom's permission. It's nice to know who is asking/interested in how she is doing. Also ask what she DOESN'T want others to know.

Best wishes to both your mom & you.

BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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CRguy
Posts: 10179
Joined: Sun Feb 10, 2008 6:00 pm

Re: Caring bridge site

Postby CRguy » Sat Jul 29, 2017 3:55 pm

I basically do not do social media, as a personal choice, and because of obvious security and privacy concerns.

If you just want a venue to join family members together for discussion... ????

I have set up invite only / private Google "groups" where anyone who is invited into the group by you, can read / write to and from all other participants.
It is easy communication with no social exposure ( as far as any online event can be "no social exposure" ) and is kind of like a private version of this forum.

The reason a lotta folks choose to reside here is, that while this is a highly searched forum, it is NOT a FaceBook / Snapchat / Instagram / Twitter open invitation to have your personal information exposed without your control or permission. Join here with a username and share what you wish .. or NOT ! BUTT if you never disclose sensitive private personal information, in general, nobody who searches here would know it is "you" unless you tell them.

Just some random thoughts from someone who Mods / Admins 3 online forums and has had epic battles with FaceBook and similar sites :twisted:
and just FYI ... CaringBridge does use its memberlist to "solicit" funding from folks. It is not GoFundMe, BUTT I have received numerous "donation" requests over the years, either from individual member accounts or someone ostensibly soliciting for a member.

JMO and I am probably a bit more cynical and obstreperous than the usual CRC caregiver / survivor :shock:

Cheers and best wishes
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Caring bridge site

Postby Maia » Sat Jul 29, 2017 7:50 pm

ocstacy wrote:Should you ask permission of the person you want to write about?


YES.

hawkowl
Posts: 127
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Caring bridge site

Postby hawkowl » Sat Jul 29, 2017 8:01 pm

Yes for sure ask permission, and find out how much info she wants to share. I used mine more as a personal blog where I could share some thoughts and insights during my treatment and recovery, but not actually share any skecific medical details suck as scan or blood test results. I like all the positive feedback, prayers, and encouragement I received in response to my posts and that in turn boosted my morale. Even now, nearly two years out, I Stil go back and read it when I'm having a down day.
Dx 12/2014 T3N2MX (distant LPLN) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda, SBRT
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7, scans stable...
6/2020 5 years of normal CEA and stable scans
Now dealing with pyoderma gangrenosum.
Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

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ocstacy
Posts: 264
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

Re: Caring bridge site

Postby ocstacy » Sun Jul 30, 2017 6:55 pm

Hi all,

Thank you for your feedback. I talked to her nurse navigator and she didn't even know about Caring Bridge so I actually taught her something new.
My mom has two more weeks of treatment so I decided not to even bring it up. Her oncologist keeps telling us that we are lucky we caught it early so I guess that makes it a more positive feeling. I have decided not to even bring it up to my mom, and of course I would have asked her first before posting anything at all.

I have learned so much on my mom's journey and I thank you all for your support. I live the moment day by day, ups and downs. It's okay not to be strong .. so they say.. but I always try to remain strong and so happy that my mom is gaining weight now, than losing :D
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.


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